"We started seeing it in these pictures right here," says Barb Vorpahl, looking at pictures of her daughter, Stacey. She was diagnosed at 18 months.
Her dad, Gary Vorpahl says, "you look at your child that looks like a normal typical kid running and playing and doing all the things that kids their age do, and knowing in the back of your mind that they have the diagnosis."
Stacey lived to age 19, beating the odds since most with Niemann-Pick Disease pass away at 8, 9, or 10. The rare disease is where the body can not metabolize cholesterol and the brain deteriorates. For Stacey her battle with the disease ended this past October.
"Last year Stacey was here with us, and this is the first year that she won't be," says her mom.
While Stacey's race against time may have come to an end, her legacy lives on through events like the one in Jefferson where they are honoring her tonight.
"We watched Stacey grow up, and we heard her story, and so Stacey became part of our life," says Barb Endl, the President of Tomorrow's Hope.
People are walking with a purpose at Tomorrow's Hope fundraiser. They are collecting cash for lots of diseases including Stacey's. Her parents also want all people to learn from Stacey's short life.
"To live for the moment, to find pleasure in the little things, that's what she did. You know she couldn't walk, she couldn't talk, she couldn't do any of that, yet she was happy," says Barb Vorpahl.
June 25th, 2005 her parents are hosting a Golf "Fore" Stacey Memorial at Spring Creek Golf Center. Call 920-563-4499 to sign up for the fundraiser.